Sunday, September 30, 2012

Interesting, right? "It's like my knee is doing push-ups!" I'm not exactly a medical professional, but I'm pretty sure that is not the direction a knee is supposed to move on purpose. Anyway, I don't know how long she has been able to do this for, but sometime in the past couple of months, I would feel her popping it while we were cuddling at night. She also says that she does it in class when she feels bored (why twiddle your thumbs when you can dislocate your knee?). Then she showed her music teacher and class (poor Mr. N! he is a little sensitive about weird medical stuff), and he had her show the nurse, too. We kind of wrote it off as just one of those weird KayTar things (and musculoskeletal issues are soooo far down on the triage list around here), but as it was discussed more, I thought it might be at least a mention to her OT on Friday.

The verdict is: Nope! Not normal! And yup! It will cause damage and make her more prone to injury!

She said that if she keeps moving it that way, within a year or two she will start to have pain and she is likely to tear a ligament (ACL/PCL) and need surgery/bracing. She is going to talk to the PT and we'll start work on getting it tightened up and hopefully avoid pain/injury/surgery. Glad I asked!

Friday, September 28, 2012

Well, I last left you on the edge of your seats (or so I like to imagine) waiting for the arrival of a FOURTH oxygen regulator and with KayTar's sats misbehaving at school. Since then, we regulator has arrived (though not on Thursday when I spent my whole day waiting for it...nope, I had to spend most of the following Friday waiting for it, too!) and it has been working, for the most part. We did have an issue with it losing its seal on the first day she used it at school, but KayTar got out the T-handle and shut the valve ON HER OWN! I didn't even teach her how, she just learned by watching. She called it "the axe method" because she thinks the T-handle looks like a mini-axe. What a big kid she is turning into! Since then we have been taking it off the tank after every use and putting it back on when she needs it and haven't had anymore issues (KNOCK ON WOOD!). We shouldn't have to take it off, except to refill the tank, but whatever...if it is working, I'm happy.

As far as her sats...meh. She is below the pulmonologist's cut off more often than we'd like and nearly every day in PE. The plan this week has been to put her on oxygen for 30 minutes to an hour before PE regardless of sats (as long as it doesn't put her at 100%) to give her body a break and perhaps increase its ability to meet her needs during the 30 minutes of PE. In addition, if her sats are low at her lunchtime check, we just put her on oxygen after lunch and keep her on until PE. If her sats are low in PE, then she gets oxygen at that point and keeps it on through music. So far, it does not seem to be making her sats any better DURING PE, but my hope is that giving her a body a break before/after that exertion will minimize any ill effects from it. She enjoys PE and I do think it benefits her to stretch her abilities (they encourage her to participate, but always allow her to self-modify)...this week she walked a MILE (or so she told me, 7 stamps=1 mile and she earned 7 stamps). KayTar walked a MILE! I probably would not have thought it possible and I definitely would not have allowed/asked her to push it like that in real life, but she did it (and besides her oxygen issues, she handled it well)...which is why I think there is a benefit to her participating in PE. I don't want to pull her out because of the low hanging sats, but putting her on oxygen during that madness (there are a TON of kids in PE) isn't feasible either. So for now, we're going to keep plugging along like this, tweak some things, and see how it goes. The pulmonologist might have a different plan for us when we see her in November, but we'll cross that bridge when we come to it.

It is a relief to finally have reliable equipment for her (though, I'm totally scared to try the regulator on the other 2 tanks we have because I'm afraid it will break!) and it feels good to be settling into a routine and have some rough form of a plan in place. It isn't perfect and we'll have to tweak it many times, I'm sure, but the worst part of new medical needs/new equipment is all of the unknowns. It feels like the answer to every question becomes "I don't know!" and I hate living like that. Once we get to a place where we have some idea of what direction to head and what our day to day might look like, I feel much better about it. Now we know that on most healthy days, KayTar will likely need oxygen at least part of the day, and on most sick days, KayTar will probably need oxygen most, if not all, of the day. We may not know ALL of the answers, but I can definitely settle for knowing one or two!

Monday, September 24, 2012

I realized I never posted about our little trip this summer. We went to Jellystone Park (and brought Josh's littlest sister along, she is 9 months older than BubTar) and stayed in a cabin for a few days. The kids loved the water park and had a great time!

Thursday, September 20, 2012

I am at home today, waiting on a FOURTH regulator from the home health company, as we have had THREE malfunction on us since last week. THREE!

The first one worked great initially. We used it on the E tank for about 3.5 weeks without any issues. Then we got the little M6 tank, put the old regulator on it, and sent it to school with KayTar...and it blew. It kept blowing. The HHC replaced it.

The second one worked great when we first put it on, but within an hour of being on the tank...it blew! And kept blowing. The HHC replaced it with an ADULT regulator, thinking maybe the pediatric regulators were faulty. The RT told me that we were the only ones having issues with these new regulators. Great!

The third one seemed to work great initially. I tried it on both tanks and it felt VERY secure. I sent it to school on the M6 tank...and it blew! I thought that maybe I hadn't secured it well enough (because it made a pretty tight seal and I bruised my hand with putting it on/taking it off the tanks the night before), because eventually the nurse did get it to run for KayTar at school for a while after reseating it a few times.When we got it home, I cracked the tank and turned on the regulator and KA-whoooosh! Grrr. We've been trying to get it to work, because I just can't believe we have had so many faulty regulators...but nothing is working. I even tried it on the E tank, but it KA-whooshed and it was like 10 times louder. I seriously JUMPED back.

I've been reading about regulators and trying to figure out if we might be doing something that is causing this to happen, but I can't seem to find any answers! However, I did realize that the only thing that changed when we went from Working Regulators to Non-Working Regulators was that we started using the little M6 tank. The tank itself looks fine. I don't see any imperfections. But I think possibly somehow that tank is causing these regulators to break..it is the only theory I can come up with that makes any kind of sense. If it was something WE were doing incorrectly, this would have been happening since the beginning...but we used her E tank for 3.5 weeks without any problems. If it was really faulty regulators, I would believe one...maybe even two...but THREE? In a row? It just doesn't seem likely. So I'm at home today, waiting for the RT to come by and either swap out a new regulator with the intention of ONLY using it on the E tank...or with a new regulator and a new M6 tank. It is almost 2 and I haven't heard from her yet. The tank and regulator are at school with KayTar in case she needs it (with the hopes the with reseating, she can get enough O2 without it blowing), so I need to go get it when the RT is headed this way. Hopefully she calls in advance and doesn't arrive when I am out picking KayTar up...like on Monday! Most of all, I hope we can get this figured out for good...so we can have a reliable portable oxygen system for KayTar!

She was patting her tank like she was burping a baby and said, "My baby has gas!! Get it? Because oxygen IS a gas?!"

PS: While I was writing this, the nurse emailed me and said KayTar had low sats in PE and she was attempting to start the O2, but it wouldn't make a seal at all...so she had to go without. AGH! We have to get this figured out!

Saturday, September 15, 2012

I finally talked to the pulmonologist's nurse on Thursday. She said that Dr. J wants KayTar on oxygen when her sats hit 95% or below. I asked her the same question in about four different ways, hoping to get a different answer, but NOPE! 95% is when she needs to go on oxygen, no matter how I phrased it. The truth is that I was pretty deflated by this news. We've been checking her sats both at home and at school this week and she is RARELY over 95%...in fact, even with my low-ball order of at/below 92%, she still has been on oxygen twice at school this week! When I heard the official orders, I felt kind of like this...sideways and all. LOL!

I understand the orders, I do. If KayTar's body is already struggling to make ends meet and running sub-optimally, then allowing her to sat low and experience chronic, even slight hypoxemia, is not ideal...especially when we have the ability to fix it for her. I get it. I just feel a little fussy about it! Initially I was worried about how KayTar would feel about it because when she first started overnight oxygen, she said, "I'm glad I don't have to wear this at school, people would think I'm weird!" but when I talked to her about the fact that her needing to wear oxygen in class might be more than hypothetical, she said, "That'd be okay...and I could build my muscles from carrying the bag!" I've obviously got a lot to learn from that kid, because I was not feeling so swell about it!

We didn't want to rock the boat at school too much, but the (best) nurse (in the universe) offered to check her sats a little more frequently on Friday, in case the two little snapshots (before lunch/during PE) of her oxygen levels were not entirely telling...but still, at 2/3 checks she was below the cut-off and she ended up on oxygen in the afternoon. I don't know what it means or what the best way to proceed is, honestly. Maybe her sats are running low due to the infection she had LAST week or maybe they are always like this. Maybe we should just keep her on oxygen all day at school when she is in the classroom and PE (and let her go off of it for lunch/specials), since she is low so often and it isn't feasible to monitor her frequently. Maybe she just needs a boost a couple of times a day. Maybe, maybe, maybe! At this point, I don't know what our plan for Monday will be (oh, and to complicate this further, the regulators on the small tank seem to be malfunctioning!)...but I've at least accepted that we do need a plan! So far today, her sats have been good at every check...so I am still holding out a little hope that this is a temporary set-back due to the respiratory infection she is just getting over and maybe she will just need additional supports when recovering...but if that isn't the case, we'll deal with it.

The tough part is that when we "lose" something with her (or add supports/machinery/whatever, depending on how you look at it) it is usually permanent...so unfortunately, I have FEELINGS about such things which distract me from the important things in life, like the fact that she is here with us and she is HAPPY and she is "healthy" and we have the ability to support her in these ways here at home or at school and we have precious people in our lives who help us put her needs first and care for her when she is out in the world...so many blessings!! So instead, I'm choosing to feel like THIS (okay, maybe not quite THAT happy, but you get the idea)!

Monday, September 10, 2012

KayTar has been on overnight oxygen for almost a month now and I think it is going really well. She started off being fairly bothered by the cannula, I had to cut the prongs down a little and use bandaids to secure to her face (tightly) so she would leave it on her face AND so it didn't wiggle and bother her. Then last week, she told me that she didn't think I needed to tape it anymore and she has left it on perfectly since then! We switched out cannulas last night and I didn't need to cut the prongs down this time! From a compliance standpoint, she's doing great with it!

She wakes up easier in the morning (even school mornings!) and seems to be getting better quality sleep. Last year, she got her feed in her sleep, Josh dressed her while she slept, and he carried her downstairs and she slept some more on the couch. For the most part, she is awake by the time her feed finishes this year. This morning she was a little sleepier because she it is her first day back after a week out and she still isn't feeling 100%. Nighttime alarms (when healthy) have also been reduced since starting oxygen. She was originally prescribed 1/4 liter per minute for nighttime use, but a lot of times it is insufficient to keep her sats up. When she is healthy, she is using about 1/2 liter at night and satting about 99...but when she was sick, we got up to 1.5 liters and she was still satting 95-96 overnight. Obviously, when she is sick she needs more respiratory support than we knew prior to having a monitor here at home, but we are glad to be able to give her what she needs now! She has had some fairly low desats while sick, like down to low 80s/high 70s, and generally her sats are just lower overall, especially when sleeping. From a symptom management standpoint, she seems like she is doing great with it, too.

When the pulmonologist ordered the oxygen, she did so mainly for nighttime use, but also gave us the go ahead to use it as needed during the daytime. She said to keep her oxygen sats between 96-99 and be careful not to let her sit at 100% if on oxygen. Beyond that, it is kind of our call at this point. Prior to this recent illness, we hadn't used it during the day at all, but while she has been sick, we've used it on several occasions when we notice she is satting lower than she should be (usually under 95). At home, it is a really easy call to make. We have the oxygen available, she is just sitting around here, there is NO reason not to hook her up and give her a little boost. But she is back to school today and I'm SO uncertain as to what the right call is where her oxygen is concerned. I brought the pulse ox up to school and her tiny little M6 tank (which we need to get a pulse regulator for) just in case. I told the nurse that if she is at/below 92, go ahead and start her on 1/2 a liter. It is lower than we would let it sit at home, but at school there are more issues to consider, especially social issues. Oxygen is such an OBVIOUS sign that someone is sick and I don't really want her to have to draw that kind of attention unnecessarily. I know, I know, a g-button and feeding backpack don't exactly SCREAM normalcy, but it is subtler to me...or we're just both used to it and the necessity is undeniable. I also know that a wheelchair doesn't exactly announce HEALTHY CHILD COMING THROUGH either but again, KayTar clearly needs it when we are out and about AND she loves it. That makes it a non-issue for me. She isn't totally comfortable with the oxygen yet (though she is very accepting of it at home when it is needed and she has even asked for it at times) and when she first started using it, she said, "I'm glad I don't have to wear this at school, people will think I'm WEIRD." It is a harder call to make knowing that she feels self-conscious about it. In the end, her physical health is the most important factor, but it is easy enough for me to tell myself that she was managing before we started monitoring her and before we had oxygen to give her, maybe not managing well, but managing nonetheless...so is it worth it to make her wear it at school? And how low is low enough for it to be worth it?? So many things to consider! But for today, we set the bar at 92. I also put a call into the pulmonologist to get her opinion on what the cutoff should be and I'm waiting on a call back. I feel MUCH better about putting her on the oxygen during the day if it is the DOCTOR'S call, not mine. Sometimes it is hard to willingly put more on her little plate when there is so much there already! Luckily today her sats were good when checked and it was a non-issue. She is doing a lot better and I don't really expect she will need that kind of support this week, but it will be good to have some more detailed information from the pulmonologist, so I'm hoping she gets back to me soon!

Tuesday, September 04, 2012

The germs have landed! Man, those little buggers are quick. Friday evening we drove out to my parents' country house to spend a couple of nights. Everyone had a good time (and I took a LOT of photos that I really love), but on the last day, KayTar started coughing...then she felt puny...then she wanted her oxygen in the daytime...then her throat started hurting. Uh-oh! I was hoping that it was allergy-related so I gave her a dose of Benadryl, as she helped with the hay early in the day, but it didn't quite seem like allergies.

We headed home not too long after and had to stop on the drive to give her a dose of ibuprofen for her throat and hook up/turn on her oxygen (per her request). The requests for ibuprofen continued through the day and night when her previous dose wore off, so it was clear we were dealing with an illness and not allergies...and then the fever started yesterday. Last night it was up to 103.5 with ibuprofen...poor baby was so hot and her heart rate was on the high side, too. Her usual overnight oxygen dose is 1/4 of a liter and I had her on a liter and her sats were still lower than they usually are on 1/4 and dipped much more frequently. Nothing serious, but definitely showed her little body is working harder than usual!

She is missing her first day of school for the year today. She is a little congested, has a junky cough, sore throat, and fever. Pretty sure it is just our first viral visitor of the year...hopefully it won't hang around too long and she can get back to the business of being a second grader!